Wow, I have managed to keep on schedule and get out a Waspish Wednesday post every week for three weeks! It’s so unlike me to be able to maintain a regular publishing schedule. Go, me!
This is another Lyme-related post in honor of Lyme Disease Awareness Month. This tells the oh-so-bittersweet story of how I was recently able to go back to one of the doctors who told me I didn’t have Lyme and say, in effect, “You were wrong!”
It also is kind of a sequel to my first Waspish Wednesday post, wherein I discussed a certain doctor whom I strongly dislike.
There are many reasons I dislike this doctor: That he has absolutely forbidden me access with my service dogs and failed to provide other reasonable accommodation in their place; that he thinks his office is MCS- and wheelchair-accessible, when it is neither; that he does not provide American Sign Language interpreters to Deaf patients who require them, despite the fact that it’s the law; that he is smarmy and pompous and condescending; that he once suggested my cognitive impairment (brain damage) which is well documented, was caused by “watching too much TV.” You get the idea.
However, perhaps his most egregious sin was the way he treated me when I was so severely ill with Lyme disease and coinfections that I was probably dying.
I was bitten by a tick, and a few weeks later developed classic signs of acute Lyme disease. I was put on antibiotics; I improved, but did not get better. Eventually, I got much, much worse, until I couldn’t speak or move my limbs, was in excruciating pain all the time, had dozens of other symptoms, and was unable to leave my bed. This doctor was supposedly a Lyme-literate physician (LLMD), which means that, unlike most doctors, he knew about coinfections and “believed in” chronic Lyme, etcetera.
I went to see him, with a friend interpreting for me (because, remember, he doesn’t pay for ASL interpreters), and he was so rattled by how sick I was that he could barely stand to be in the same room with me. He said, “I don’t know what this is, but it isn’t Lyme. Lyme can’t do this. You need to find a doctor who can diagnose and treat you, and then come back, and I can help you.”
Then he got me out of his office so fast, you’d have thought I was a pile of shit on fire.
He wasn’t the only “unhelpful” doctor I dealt with. Some doctors refused to see me at all, just because I had Lyme. Others said they didn’t know what was wrong, and/or thought I didn’t have Lyme because my tests were negative. Still others did believe I had Lyme but didn’t want to take on my case because I was so sick, they were afraid they couldn’t provide adequate care.
However, none of these other doctors advertised themselves as Lyme specialists, then told me I didn’t have Lyme because “Lyme can’t do this.” No other physician told me that after another doctor diagnosed and treated me, he could help me. (What was he planning to do for me, exactly? Sing “Kumbaya”?)
Now, three years later, I’ve been definitively diagnosed with Lyme disease, babesia, and bartonella, and have been on aggressive antibiotic and antiparasitic treatment. Most of the time, I can speak. Most of the time I can sit up, move my limbs, brush my own teeth, do limited walking inside my house, and all sorts of other things I couldn’t do when I was being refused treatment because “Lyme can’t do that.”
So, two weeks ago, I went to see this doctor because he’s the only specialist in this region for another condition I have, and I was told if I didn’t have an appointment, they’d withhold treatment.
I started our appointment by refreshing his memory about the state I was in when last I saw him. Then I said, “Remember how you said, ‘Lyme can’t cause this’? Well, it turns out that Lyme did cause that. I got tested again in October 2008, and I was positive for Lyme and babesia.”
He expressed moderate surprise and requested copies of the labwork. I knew he would do that. I hadn’t brought it. He asked me to fax them to him. I said I would, but I probably won’t.
He did not say, “Wow, I really blew it on that one. I’m so glad that after nine months of multiple infections digging deeper into your organs and central nervous system, you got treatment. I have learned my lesson and will treat severe Lyme cases much differently in the future.”
Not that I expected it.
A lot of other annoying things happened, which I won’t go into, and then he asked me who was treating me for Lyme. I told him, and he asked me to please pass along his kind regards, as he thinks very highly of my treating doctor.
“Yes,” I said. “I think Dr. ___ saved my life.”
Either he didn’t hear me say that or he pretended not to. I don’t know if he caught the implication that he essentially left me to die.
Then, he yanked the plug on the only treatment I’d been getting from him — the entire reason I schlepped my tired ass to his office after avoiding him for over three years — and I left.
I don’t know if anything I said penetrated his thick armor of smugness, but for the sake of the next Lyme patient who enters his office, I sure as hell hope so.
I don’t know why he’s unable to say a mea culpa. Maybe he has some sort of brain injury that interferes with his “guilt processing center.” If so, it’s probably caused by not watching enough TV.
– Sharon, the muse of Gadget (I got stung by a bee waiting outside his office because he wouldn’t let me in!), and Barnum, SDiT?
This post is dedicated to the memory of Laura Hershey.
I’m working on a new skill with Barnum, and it’s going well. It’s not a skill I’ve trained with my previous service dogs, so it took some creativity to figure out. I’m pleased with the progress we’ve made, and I even have a couple of training sessions on video (see the end of the post for the video).
Normally, with a new skill to reveal, I’d have pounded out this post as fast as I could. Instead, I’ve been procrastinating, nervous as hell, for several weeks, about writing.
Well, no. It’s not the writing I dread so much as the moment I click the “Publish” button.
I thought this would be an appropriate post for the topic of “relationships,” because the changes in my moods, behavior, and personality in the last few years have greatly affected my relationships with my friends, my health care providers, myself, my previous service dog, Gadget, and now, my service-dog-in-training, Barnum.
This is not my first “coming out.” I came out as bisexual at age 18, and then again as lesbian at 20. Older, wiser queers told me that coming out is a lifelong process — that you are always meeting new people, and deciding whether to come out to them.
This is true, although by now, I’ve been out as queer for most of my life. “Coming out” about having chronic, intermittent mental illness is a whole ‘nother ball of wax. It’s taken me until almost just this minute to admit it to myself, let alone naming it publicly.
I usually use a lot of euphemisms and skate around the issue with comments like, “I’ve sometimes experienced psychological symptoms due to Lyme.” Or, “I have neurological symptoms that affect my mood and behavior.”
I don’t like applying the term “mental illness” to myself. That realization alone — my queasiness at identifying this way — is painful: I’m a disability rights activist. I believe in cross-disability unity and support. Many of the people I love most have psychiatric struggles, and I’m not aware of judging them or viewing them as “less-than.”
I have long considered myself an ally around mental-health oppression. How can I have so much internalized ableism about mental illness?
Part of the answer has to be that it’s always different when we become more of a “them,” than an “us.” Like one feminist said to another, “I have nothing against lesbians. I just wouldn’t want my daughter to marry one.”
Laura Hershey*, the writer and disability rights activist (and lesbian), wrote a poem which has become something of a disability-rights anthem. It’s called, “You Get Proud by Practicing.” I believe this to my core. I got proud of being a dyke by coming out proudly, again and again.
It didn’t hurt that the reason I’d figured out I was a lesbian was that I’d fallen in love for the first time. Falling in love is often the reason women realize they’re gay. Disability is not as easy to fall in love with.
I’ve had physical disabilities since 1995. Here, again, I had some practice and preparation for being proud, having been a nondisabled member of the disability rights community before getting sick, myself. That helped me to accept my own disabilities much more quickly and fully than if I’d started from scratch.
While the disability community is my home, and I am proud of being part of it, there’s no denying that my illnesses cause a great deal of physical suffering and are a source of loss and limitation. I don’t celebrate my pain, exhaustion, and insomnia. Nonetheless, disability is my identity. It is a part of me, and always will be, even while I try to regain my health.
My pride as a member of the disability community makes it harder to admit that from 1995 until recently, I took satisfaction in saying that my disabilities were solely physical and cognitive.
For example, I know plenty of people with multiple chemical sensitivity who have reactions to exposures that include crying, depression, anxiety, or anger. I thought that because my MCS didn’t include those symptoms, I was special, somehow. I thought it made my MCS more “real.”
I’m trying to have compassion for myself. I’m a member of so many marginalized groups as it is; nobody chooses to get hit with another pile of stigma.
As I own my regrets, I try to embrace what these hierarchies I unknowingly bought into tell me about my own feelings of self-worth (or lack thereof). Writing this post is a big step for me in practicing being proud.
Even more to the point, the disabilities I’ve had most of my adult life have required me to convince multiple doctors (and other gatekeepers of disability services), for years on end, that my illnesses are “real” (i.e., not psychosomatic), in order for me to receive appropriate diagnoses and treatments.
Of course, this dichotomy is false and damaging. Mental illnesses are real, too. And having a psychiatric condition does not rule out a physical condition, or vice-versa.
The fact remains, though, that for people with CFIDS, MCS, and Lyme, the choice is often an untenable one. Either admit some element of psychological symptomology and be treated like a “crazy” and receive no medical care (and therefore no financial or other supports) — or worse, receive damaging, inappropriate treatment. Or, vigorously deny any emotional suffering that might accompany the physical illnesses, lest it eclipse all other forms of illness or disability.
It should be clear by now that my relationship to myself and to my healthcare providers has been pretty fraught around the issue of mental health. That’s just the tip of the iceberg.
The changes to my mood, personality, and behavior began during the summer of 2007, when I began treatment for Lyme disease. At the time, I didn’t know about Herxheimer reactions (known informally as “herxing”).
This is the term for severe worsening of symptoms when antibiotics or antiparasitics kill off pathogenic microorganisms, a process that releases toxins into the body. Herxing was first noted and named in syphilis patients, which is appropriate, because the spirochete that causes Lyme is very closely related to the one that causes syphilis.
Because the infections I have can affect all systems of the body, herxes are usually multi-symptom and multi-system. The list of symptoms I’ve experienced when herxing is too long to attempt, but some of the standouts are migraines, body pain, severe weakness/exhaustion/immobility, memory/thinking impairments, vocal-cord apraxia (inability to speak), and, of course, the psychiatric symptoms.
Before I learned about herxing, and how severe and arduous it can be, I started each new treatment at the full dose, because I wanted to kill the damn bugs and recover as fast as I could. Little did I know how this would damage my life.
When I was receiving no treatment for nine months, because I couldn’t convince any doctors I still had Lyme, my psych symptoms got worse. I had major mood swings, rage, agitation, suicidality, and a general feeling of disconnection and hopelessness.
Then, in October 2008, I went on serious Lyme and babesia treatment for the first time. I think my friends and I all expected me to improve.
Instead, I herxed hard for over two years, starting with the initial Lyme and babesia treatments, and then adding additional ones, as well as treatment for Bartonella, which my doctor and I suspect is the biggest culprit in my psych symptoms. The result of all this was that previously dormant symptoms emerged and existing ones got worse. And stayed worse. Continuously. It was hell.
It’s hard for me to remember that time. This is literally true, due to neurological damage, but I also just don’t want to relive it, even in memory, even for a moment, because the physical and emotional pain and suffering were enormous.
The psychological symptom that has been the most persistent, and which I think has cost me the most in lost and damaged relationships, is agitation.
I had always assumed “agitation” was anxiety, because I think that’s how the word is used in general parlance. However, when I read some psychiatric case studies of people with Bartonella, their description of many of the psychological symptoms I had, especially agitation, was right on target.
When I experience agitation, the best way I can think to describe it is as obsessive rage, with an undercurrent of low-level anxiety. I get really angry about something that may or may not be a big deal, and then I just get stuck in the rage.
Physical aggression, explosive anger, increased psychomotor activity, impulsivity, verbal aggression, disorganized thinking, perceptual disturbances, and reduced ability to maintain or appropriately shift attention were rated by at least 50% of the sample as very important or essential to agitation.
This gives a relatively clear picture of what my agitation was like when it was at its worst, with the exception of the physical aspects (wasn’t up to much motor activity). Thank goodness, my agitation has not been nearly that bad in the past year or two.
However, when it was bad, along with all my other illness issues, I was in a state of ongoing crisis. The result was that my psychotherapist of many years terminated with me, and my two best friends — who were my family of choice — and three additional friends, ditched me. There was a ripple effect, as I lost the larger circle of friends and acquaintances who were associated with the closer people who abandoned me.
During the worst struggle of my life, I lost all the people I could see in person, except my partner, my parents, and my personal care assistants. Now, I only have friends via phone or email.
I also lost myself.
I hadn’t known this was possible. I’d always had a very strong sense of self, and I’d worked hard to become a person I could like and respect. Lyme tossed that out the window. Suddenly, I was a miserable person who felt out-of-control of myself and my behavior, and despised myself almost as much as I despised those around me.
My saving grace was Gadget. He was always his same, normal, doggy self, and he didn’t seem bothered by my moods. When I was suicidal and had convinced myself that I was a burden to everyone, that they would be relieved if I died, I reminded myself that I was not a burden to Gadget, that he needed me as much as I needed him. I told myself that I had to stick around for him.
In many ways, he saved me during my worst times; not only did he assist me as my service dog, he listened to me and understood me when nobody else could. He provided a soft, warm presence. Most healing of all, when I was being abandoned right and left — and even those who stayed in my life let me know how difficult I was — Gadget didn’t judge me. He never blamed me for being sick, whatever form it took. He was a dog.
He just was. We just were. I needed that.
Losing that source of love without judgement, when Gadget died, was devastating.
A lot has changed since the worst two or three years of Lyme. For one, I am “me” much more of the time. I guess you could say I’m finding my new self, now.
I’m not herxing all the time anymore. That is a blessing. Being able to laugh, to “let things go,” to be glad I’m alive, to feel gratitude and joy, to be relatively stable in my moods — all this, and more, I can never take for granted again.
However, even when I am herxing, I am much more aware of when and how much I’m altered, and I have many more tools to manage the symptoms. I have a new therapist; I’m building a support system by phone and internet; I have more strategies to cope with “the crazies,” as I call them.
A big strategy is to isolate myself from other people, as much as possible, so that I don’t take my rage out on them. I try to distract myself by watching a DVD on my computer, or dog sports on youtube, or listening to a book. I tell myself not to throw things, because they will break! (This seems obvious, and yet, when I had a bad agitation period and threw something, I was surprised that it broke. I guess that’s the impulse-control aspect.)
I remind myself that it is not really “me,” it is just herxing, and it will pass. I do deep breathing, but in all honesty, I don’t think that helps much. Meditating would help, but I have trouble doing it without a partner.
And now I have a new tool, possibly one of the best in my toolbox. You have probably guessed that it is Barnum!
Like my two previous SDs, Jersey and Gadget, Barnum will primarily be trained in physical service skills, including labor-saving tasks (retrieving, opening and closing doors and drawers, turning lights on and off, getting the phone, helping me dress and undress, providing stabilization for transfers), and memory/cognitive issues support, such as sound alerts (e.g., waking me when my infusion pump alarm or timer go off).
In addition to these tasks, it occurred to me recently, when I was experiencing a bout of agitation (because I am on a new antibiotic and herxing again — fun!), that maybe I could train Barnum to help me get past it.
For some reason, my agitation expresses itself the worst with people, and the closer I am (emotionally) to the person, the more I fixate on them as the source of my rage. (Even if a little voice is telling me that I’m being irrational, I sometimes get enraged at the little voice. Or, I feel ashamed for being irrational, while continuing to feel enraged, which is the worst of all.)
I also, as I indicated above when I said I have the urge to smash thing, can feel angry at inanimate objects. However, even when I’m agitated, I generally feel amused by, or loving towards, Barnum. In extreme cases, I feel distant from him, too, but when that happens, I just give him something to chew, or he takes a nap.
A couple of weeks ago, I was having bad agitation, but I was able to think clearly enough to get curious: I decided to experiment with behaviors Barnum might be able to perform that would interrupt or soothe my agitation.
I had already taught him “chin,” which means “hold your chin in my palm.” I’ve been shaping that behavior for duration as well as for force/pressure. (I like him to really press his chin into my hand, not just rest it lightly.) I have started to use the cue for other locations, too, so I can say “chin” and point to my thigh, and he will put his chin on my thigh.
I taught him “chin,” in part, because I thought it might be useful for psych symptoms. I thought it might feel grounding to have that contact. However, I knew I’d have to wait until I was having the symptoms to try it out, because one of the most challenging aspects of managing my psych symptoms is that I can’t tell how they’ll manifest when I’m not in the thick of them.
We tried the following behaviors, some of which I cued, and some of which he offered, through free-shaping:
Licking the back of my hand. This felt good, but it’s not something he could sustain, and since my agitation can last from 15 minutes to several hours, it didn’t seem worth pursuing.
Breathing into my palm. The tactile combination of the warmth, moisture, and rhythm of his breath was grounding, but again, this is really not something he could sustain, particularly because it works best when he breathes out heavily, in a sigh or snort, and if I asked him to do that repeatedly, he’d end up hyperventilating!
Chin-in-palm, which he knows well, wasn’t enough pressure — not grounding enough — to really dispel the agitation. It felt too “small” for the magnitude of my feelings.
Resting his forelegs over my calves. The first night we tried this, it did make me feel a little better emotionally, but I was experiencing much less pain in my lower legs than I normally do. I have trained Barnum not to step on, or lie across, my legs, but I was letting him experiment while we free-shaped. I thought it probably was not a good long-term solution due to the body pain issue. Sure enough, we tried it again the next night (because I was agitated several nights in a row), and the second night, my calves, ankles, and feet were burning, so I did not want him touching any of those parts.
By this point, we had not come up with anything that really felt “right.” However — and this is a big however — the process of training, itself, completely turned my mood around!
For one thing, clicker training is so much fun, it’s incompatible with staying grouchy. This is especially true for free-shaping; I find it impossible not to be charmed, proud, and delighted when Barnum offers ideas of his own. (I explained free-shaping in this previous post.)
Furthermore, clicker training requires total concentration and absorption. It is a mental, emotional, and physical sport:
Physically, both hands are busy, one with clicking, the other with treating, and sometimes a hand is needed for targeting or luring, which demands even more work (particularly because I do not have three hands).
Precision timing is a must, which places great demands on body and mind (especially since hand-eye coordination has never been my strong suit).
It’s also important to stay completely calm and focused so that I am not unintentionally cueing behaviors or otherwise telegraphing undesirable messages.
Finally, it’s a dog-training truism that you cannot train angry. It’s just a bad, bad idea. Thus, mastery of my emotions was not so much the desired outcome as the prerequisite to make the attempt.
Another benefit that I had not anticipated was that, because we were experimenting, I was constantly checking in with my body/mind about whether, or how much, Barnum’s contact was affecting my levels of anxiety, tension, and the like.
As for the obsessive aspect, I didn’t have any time to obsess — I was way too busy, body and mind, trying to get just right that split-second timing of the click and that treat delivery (speed and location), deciding when to raise the criteria, and on and on. When we were done with our session, I found that my rage had just melted away.
While clicker training often looks simple and repetitive (and in some ways, it is), if you’re doing it right, you are constantly not just reacting — which is one form of decision-making — but also planning your next few clicks. In this way (simple, yet complex), it reminds me of martial arts, which also demands great mental, physical, and emotional control and energy, and where you are both reacting and planning several moves ahead, at the same time.
When trainer and trainee are both problem-solving in a fluid, yet rapid-fire, state, it’s exhilarating and challenging! There is just no room to ruminate on rage when your mind is so engaged otherwise.
After a while, I decided we both needed a break. He happened to lie with his body all along my left side, particularly against my outer thigh, which is numb from some nerve damage, so it’s one of the few places that doesn’t usually hurt a lot.
Also, my thighs, in general, are not usually nearly as painful as my lower legs, so when he also flopped his head onto my thigh, the weight of his head wasn’t problematic. In fact, I realized this was the behavior I wanted to capture. With his body against my side and his head on my thigh, I felt better right away.
I went right back to reinforcing and shaping in order to capture the behavior. (Fortunately, I keep a bag of dog treats in my bed at all times.) Barnum was very relaxed, too, and often kept his head on my leg and just let me pop pieces of hot dog right into his mouth, allowing me to click with a very high rate of reinforcement.
At one point, he rolled his shoulder partway onto me, so instead of just his chin, he pressed with his cheek, letting even more of his big head rest very heavily on my thigh, which was perfect. I click/treated as many repetitions of that as I could. I tried to shape for a very heavy head, and also reinforced heavily for using his cheek instead of just his chin.
The fact that training itself is (psychologically) therapeutic for me is a big plus. The first night we did “agitation-interruption training,” I started out barely able to breathe for rage. By the end of our first session, I was laughing and beaming. Really!
Unfortunately, there’s a physical cost. I’ve written about this before: Whatever is good for me physically is bad for me emotionally, and vice-versa. This is no exception. I was totally flattened by pain and exhaustion the next day. But, it was worth it, that time around.
(Note: If you’re having trouble accessing After Gadget video via email or on an iPad, you should be able to view them on the web and/or from a “regular” computer without a problem.)
Here is a video of parts of the second and third training sessions:
There is no dialogue in this video (partly because my voice wasn’t working the second day), however a captioned version is available here, so you can see when the clicks occur.
We have now done three or four sessions on this skill, and I’ll see where it leads us. I anticipate that, although he seems to be enjoying snuggling up with me at the moment, once the weather warms up, he might not want to spend time on the bed. Barnum really is a cold-weather dog. He almost always seeks the coolest possible location. Pressed up against me in bed is about the warmest place in the house. But, we’ll just keep on noodling with it, and see how we do.
Once again, my relationship with my service dog (or SDiT), is turning out to be some of the best medicine:
For, what is training after all, but practicing? He is helping me practice becoming “unagitated.”
Further, when Barnum and I are working well together as a team, when we are training, I feel so proud of him that some of it spills over onto me.
Now I have a way of approaching my scariest, and in some ways, most painful symptom, the one I’ve been ashamed of for so long, and finding it less scary. Finding that there is something I can do about it, through my teamwork with Barnum.
Thank you, Barnum, for helping me to get proud (and chill out), by practicing.
Thank you to my readers, for helping me find the courage to write about this topic. Please support the others participating in the Blog Carnival of Mental Health!
– Sharon, the muse of Gadget (I had a few phobias, but otherwise I was supremely mentally healthy), and Barnum (SDiT and mental health practitioner)
*I’m sad to report, to those who don’t know, that Laura died a few months ago. I was so shocked when I heard. She had been a role model and a source of learning for me since I first started studying the disability rights movement, 20 years ago. A little over a year ago, I was fortunate enough to work with her directly, as she spearheaded the protest of Jerry Lewis’s “Humanitarian Oscar” for his MDA telethons. She was so gracious and encouraging in my efforts to provide “ground support” by doing what I could online, from bed, since I couldn’t go to Los Angeles, like she and others were. I haven’t written about her death, because I have been at a loss for what to say, until now.
This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As you’ll see at the bottom of this post, I’m not the only one.)
The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.
[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.
My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).
Summer of 2007
My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.
Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.
I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.
I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.
I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.
About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.
At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.
I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.
Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.
My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.
I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.
“Something Curable and Non-Controversial”
I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”
I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.
It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.
I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.
Thank God I had that rash.
Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.
In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.
I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.
I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.
However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.
That’s what they say. Officially. However, none of the doctors seemed to know this. . . .
“Lyme Can’t Cause This.”
I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.
The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.
“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.
Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.
Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.
I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.
During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.
I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.
“Positive”
Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.
I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.
“Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
“Lyme disease — Confirmed by Southern Dot Blot, Positive.”
“Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”
As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.
Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.
With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.
Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.
“Dubious?” How about “Definitions”?
The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.
My body — my story — provides the evidence that the IDSA is wrong.
Let’s break it down, definition by definition:
Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.
So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.
I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.
If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.
If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.
Thank you for reading.
-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts
P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”
I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.
May is Lyme Disease Awareness Month. I have many diseases, and they each have various awareness days or months, so I generally don’t participate — it’s too overwhelming. In fact, May is also International MCS Awareness month, which means I could do a double-header if I was up to it. Which I’m not, due to Lyme making me too nonfunctional. (See the segue?)
I have three-dozen draft posts on a variety of other topics for After Gadget that I’ve never published. But I’m determined to finish and post these Lyme Awareness Blogs, even if I can’t squeeze them all in this month. They cannot be more unedited pieces languishing in my draft folder. The topic’s too important.
My inability to publish with any urgency or regularity tells you a bit about living with Lyme. Extreme exhaustion, trouble with memory and word retrieval, and poor stamina are all part of the picture. So is severe and relentless body pain, insomnia, migraines (and all that goes along with them), dizziness, weakness, and much more. That’s about enough of that laundry list.
You see, there are a lot of other terrific Lyme Awareness Month posts that tell “a-day-in-the-life of a Lymie” or explain symptoms or elucidate the bacteriological mechanisms behind the disease.
Mandy Hughes eyes uncertainty in her struggle with Lyme.
I definitely urge you to rent and watch the film, Under Our Skin. It is a phenomenal piece of work, and it will completely transform what you thought you knew about Lyme disease.
Another unusual aspect of Lyme is that it affects people and dogs; both Gadget and I contracted it. Many disabilities cannot be prevented, or cannot be ameliorated. Lyme, to varying degrees, can — that’s what makes awareness so crucial.
Gadget and I both had Lyme here, but I didn't know it.
The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:
How Lyme can affect your dog, and what you need to know about it (that your vet might not).
How Lyme can affect you,and what you need to know about it (that your doctor might not). **UPDATE: I finally wrote Part 2, about my Lyme journey, which is so representative of so many people’s, unfortunately.**
How Lyme transformed my experience specifically as a service dog partner.
Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people.
So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.
You probably wouldn’t be here if you didn’t care about dogs, so Part I is dedicated to . . .
Part I: Awareness of Lyme Disease in Dogs
Disclaimer: This information is presented for informational purposes only. I am not a veterinarian or any other kind of health professional, just an informed consumer. These are my own opinions, based on my experience and research. Every dog — and their person — is different.Always do your own research, and trust your instincts!
Side A: PREVENTION
This Petside blog in honor of Lyme Awareness Month is pretty typical of most veterinary Lyme articles, or a bit better. It urges daily tick checks, gives basic (though limited) information on how to remove ticks(though this Lyme site does it better), and warns that Lyme is a problem in every US state and in every country worldwide.
American Lyme Disease Foundation map showing highest concentrations of Lyme-infected ticks.
Please reread that sentence, above. I cannot tell you how many times I have heard people say, “Lyme isn’t a problem here.” Doctors, too, frequently tell patients with Lyme, “Oh, we don’t have Lyme in [our state].” Unfortunately, many veterinarians believe the same thing. Some will even refuse to test for Lyme or other TBDs. If your vet does this, it’s time to get a new (or a second) vet. These are not diseases you can afford to stick your head in the sand about.
The sad reality is that nobody can say with confidence, “Lyme isn’t a problem here,” because it’s a problem everywhere. Although the dots in the map above show where Lyme-carrying ticks are most prevalent, dogs migrate as much as people. They move across the country and the globe by car and airplane for breeding, as pets, and for competitions. And wherever there are dogs, there are ticks.
I know people and dogs who have contracted Lyme in cities with almost no vegetation; in desert areas, like Arizona; and in frozen areas, like Alaska. Lyme is spreading into areas where it was previously extremely rare. Certainly, in endemic areas such as the West Coast, the Great Lakes region, and the East Coast, vets should test and evaluate for Lyme as part of routine check-ups. But even in other areas of the country, when unexplained symptoms arise (and even some otherwise explainable ones), TBDs should be ruled out.
If the ground is not totally covered in snow . . .
The Petside article, as is true of most pieces on Lyme, focuses on the hot summer months as the danger time for ticks. In fact, ticks emerge and start feasting on our dogs (and us) in the early spring and continue through the late fall. I’ve found ticks on my dogs even when there is still snow covering much of the ground.
I live in one of the most Lyme-endemic areas of the country. As of this writing, we have found over forty ticks on Barnum; at least half have been deer ticks. We started finding them in March. Last year, we found ticks through November. In fact, in my area, the worst tick times are usually April/May and September/October. Therefore, depending on where you are in the country, if you start checking your dog for ticks in May or June, you might be too late.
The Lyme vaccine was banned for human use, yet . . .
Tick prevention products not always “spot on.” . . .
Canine Lyme is transmitted by ticks (specifically by three species of ticks, the Deer Tick [or Eastern Black Legged Tick], the Lone-Star tick, and the Western Black-Legged Tick). Therefore tick-bite prevention is important. Most people (often urged by their veterinarians and groomers, who sell the products), use flea-and-tick pesticides on their dogs to combat ticks. It’s almost impossible to open a pet catalog or magazine or enter a pet-supply store without being bombarded by inducements to use these products. Advertising, of course, works. Flea-and-tick products are a billion-dollar industry. In 2006, Frontline and Advantage were the two top-selling flea-and-tick products. Advantage is made by Bayer. Only two Bayer products outsold Advantage that year — aspirin and a diabetes drug.
Unfortunately, putting Frontline or Advantix on your dog every month is not necessarily going to prevent your dog (or you) from getting Lyme. For one thing, these types of “spot-on” treatments require the tick to bite the dog to be effective; only after it’s stayed attached for eight-to-ten hours does the tick succumb to the poison it’s been drinking in the dog’s blood. Unfortunately, there is no scientific consensus as to how long a tick needs to be attached before it can transmit Lyme. Various “authorities” have told me 24 hours, 36 hours, and 72 hours, which strikes me as a pretty arbitrary range. Further, other TBDs can be transmitted within shorter intervals, such as five hours for rocky mountain spotted fever.
Equally important is whether these products work at all. I’ve been hearing from friends, neighbors, and veterinarians that formerly effective products no longer prevent ticks. These observations are affirmed by NRDC’s in-depth report, “Poisons on Pets”:
While pet products often are marketed for use against both fleas and ticks,
many are not particularly effective against ticks. . . .
Experts also have observed signs of insecticide resistance among ticks. They
simply are not as easy to treat as previously. . . . However, there is little or no hard data on the problem, since there has been no concerted federal effort to do the research and collect the data. . . .
Regional variation in resistance further complicates the picture. . . .
None of [even] the [tick-specific] products are completely effective.
Thus, new poisons are created, tested (in pretty nasty ways on puppies and kittens — just read the small print in the advertisements), marketed as “new and improved,” and sold to desperate consumers.
As someone whose life has been devastated by Lyme disease, it’s hard for me to argue against using something that works to prevent ticks to some extent, even if it doesn’t stop them all. I understand where the panic comes from.
Ultimately, knowing the risks to people, dogs, and the environment of tick pesticides, I urge safer options.
What are safer options? . . .
Solid science is emerging in the use of plant oils (essential oils derived from plants and trees) in repelling and/or killing ticks and other insects and arachnids. This EPA page provides an informational chart. I’ve done some research, and there seem to be several products on the market that repel ticks, fleas, mosquitoes, and other pests without toxic chemicals. Unfortunately, due to my sensitivity to (even natural) fragrances, I can’t use them, but for most, they should work. They generally require more frequent application than “spot on” treatments — usually once or twice a week, after getting wet, and before any expected exposure to ticks or other bugs. If you’re looking into a product that claims to be “natural” and only requires application once a month, suspicion is warranted. I don’t want to endorse specific products or stores, but this is a google search that should get you started. If you’ve used a nontoxic product that’s worked, please comment.
Even with a good, nontoxic tick spray . . .
Tick checking is crucial. The earlier a tick is removed, the lower the chances for it to pass an infection to your dog. Thus, every 24 hours at a minimum is best.
Many people think they tick check, but they are not doing a thorough enough job. For tick checking to work, every part of the people and animals at risk must be examined in detail, from toes to nose to tail to crown. On dogs, ticks’ favorite spots are usually the head (especially the ears), neck, shoulders, and legs. However, I have found ticks between toe pads, on lips, backs, anus, eyelids, and everywhere else on a dog.
If you have never found a tick on your dog, it’s because you’re not searching thoroughly.
If you live in an endemic area, and you don’t find at least several ticks per week on your dog, you are not searching thoroughly.
I know these are strong statements, but I make them based on hard experience.
For one thing, adult deer ticks are the size of a poppy seed when not engorged. Nymphal ticks are the size of a pin head when they are engorged. Most cases of Lyme transmission to humans — who are much easier to tick-check than dogs! — are caused by nymphs.
For another, frequently, other people tick check my dogs for me and tell me they didn’t find any, or they find one. Often, if I check again, I find at least one more. Once, Betsy and I found a deer tick larva on Gadget, the very smallest of ticks. We happened to be at the vet’s when we found it. It was so small, I didn’t think it was a tick until after I pull it off and examined it extremely closely to see that it had body parts. It looked like a skin fleck. When I gave it to a tech to ask her to dispose of it, she said, “How did you find this?” in an astonished tone. If vet techs in an endemic area don’t realize how small a deer tick can be, what are the chances we all overlook ticks if we don’t check thoroughly?
It takes Betsy and me, working together, at least an hour to thoroughly tick check one dog. Of course, if we had small, white dogs with short, soft hair, it would be a lot easier than large, dark dogs with long wiry hair! Even if you have a small, pale dog, looking is not enough. You have to feel every inch of the dog. This can turn into a nice nightly ritual where the dog gets a full-body massage. Gadget used to love tick checks. We called it “dog cuddling time.” He’d get very relaxed and floppy. Sometimes he would moan with pleasure or fall asleep. Barnum enjoys jumping on the bed and receiving the attention, but he still is very mouthy and wiggly, which makes it much more time-consuming. (Often, the only way we achieve it at all is that I click and treat Barnum for relaxed behavior, using the techniques outlined in Leslie McDevitt’s excellent book, Control Unleashed, while Betsy does most of the groping. Then, when she finds a tick, I pull it off.)
Sometimes Betsy or I will carefully check a leg or an ear and find no ticks, and then we will switch, and the other will find one, two, or three ticks that were missed on the same body part! Again, this is because ticks can be smaller than the dot over the “i” in this sentence. Here is a page that shows a variety of ticks, both enlarged and actual size, and before feeding and after engorgement.
Even if you don’t walk in the woods . . .
I’ve heard a lot of reasons people think their dogs (and they) are safe from Lyme and ticks. These include that they walk their dogs in the middle of the road, that they don’t take their dogs to the homes/lawns of other people (such as me) who know there are deer ticks in the area, that they keep their dogs to their own lawn, and more. If only it were so simple. (Some people also believe that if they or their dogs are ultra healthy, they will be immune. Sadly, this, too, is not the case, although as I mention at the end of the blog, a strong immune system is a major asset.)
Most people with Lyme get infected in their own yards. Some put this figure at70 percent of Lyme cases. There is a lot of information on how to make your yard less attractive to ticks. Some simple things are keeping the lawn mowed (or doing away with a lawn — clover is nice instead) and getting rid of dry leaves, brush, and other debris that harbor mice, as mice as the main carriers of Lyme to people. This New York state guide to creating a tick-free zone around your home provides more detail. It seems extremely unlikely that our dogs are any less likely to pick up ticks around their homes — that they are only acquiring these blood-sucking hitchhikers in the woods or near the ocean. In fact, ticks prefer medium-sized mammals like dogs (thus, some species of ticks are even called “dog ticks”) though ticks will feed on anything with blood that comes their way, including much larger mammals (horses) or birds, etc.
Being aware of weather and climate issues is also important. Ticks prefer a moist environment because dry heat is dangerous to their exoskeletons. Thus, the biggest Lyme outbreaks are often in coastal areas, such as Cape Cod and Long Island. Articles that focus on hiking and dog park might mislead you: don’t discount walks on rainy days — or just running outside to potty. In fact, during wet spells, we had ticks crawling onto our driveway and up our doors!
Side B: DIAGNOSIS AND TREATMENT
Prevention of tick bites is certainly important, but as is probably painfully clear by now, it is not always possible. Given this, it is essential to know the signs and symptoms of Lyme and other TBDs and to do your best to make your dog as resistant to illness as possible.
Know thine enemy . . .
Among both physicians and veterinarians familiar with Lyme disease, it is known as “the great imitator,” because its symptoms can mimic those of so many other diseases, and because Lyme — and other TBDs — can affect so many systems in the body. Because Lyme and TBDs can sometimes be fatal in dogs, or at the least can turn into chronic health issues, it’s important to know the symptoms.
In Lyme disease, the most common symptom is lameness. It is often a sudden onset, and it might move to different joints, come and go. Swelling or tenderness may or may not accompany the lameness. Other stereotypical symptoms of sudden-onset Lyme are fever, loss of appetite, lethargy, and weakness. Kidney, brain/neurologic, and cardiac symptoms — that were not previously noted — can also be signs. Dr. Schoen’s article, Lyme Disease: Fact or Fiction, is a good one, not least because he lives and works in an endemic area and has seen the many permutations this disease can take. WebMD also provides a concise, yet useful, overview of canine Lyme. If you want a broader survey, a google search using keywords Lyme dogs symptoms is effective.
One site to bookmark is Cornell’s “Consultant” search engine. You can search by the name of a disease or by the symptoms your dog is displaying.
Testing, testing, 1, 2, 3 . . .
While laboratory tests can certainly prove useful in diagnosis, in Lyme and other TBDs, they are not always the most useful tool. As previously mentioned, a dog who has been vaccinated for Lyme will usually show a false negative on certain tests. However, it is also possible for a dog to have Lyme or another TBD and for the test to come back a false negative. This is why it is so important to know the symptoms, to be aware of your dog’s level of tick exposure, and to know the prevalence of the different tick diseases in your area. If enough signs point to a TBD, and especially if your dog is really sick and/or your veterinarian is not sure of the diagnosis, it is often prudent to treat for that disease and see if there is a response.
There is also controversy about when or whether to treat when a dog tests positive for Lyme. The conventional wisdom until very recently was that the great majority of dogs who are exposed to the bacterium that causes Lyme, and who therefore have antibodies for Lyme disease, don’t actually become sick. Many vets, therefore, did not (and most still don’t), treat a dog for Lyme unless she is showing obvious symptoms.
However, new studies are showing that dogs who appear to be asymptomatic might actually be experiencing symptoms undetected — either subtle clinical symptoms or those that only show up on lab tests. In fact, the infection might cause serious long-term damage if untreated even when there are no known symptoms. This article presents this new information. It is the best I’ve read on this aspect of Lyme in dogs; please read it, and bring a copy of it to your vet.
The Great Imitator . . .
Because Lyme tests are not always accurate, and because TBDs can resemble so many other conditions, if your dog exhibits symptoms that stump you and your veterinarian, it’s important to raise the question, “Could this be Lyme and/or another TBD?” In fact, even if your vet arrives at another diagnosis, you might still want to test and/or treat for a TBD if the symptoms are suspiciously similar. For not only might Lyme be masquerading as arthritis, a heart condition, or another condition, it might also be part of the clinical picture along with another disease.
This was the case with Gadget. When the ER vet told me she was pretty certain Gadget had lymphoma, she also said it could be a tick-borne disease, so we ordered a C6 ELISA test for Lyme or a Lyme PCR, if possible — a more accurate and detailed test than the in-house SNAP test — and a complete TBD panel from Idexx. As it turned out, while Gadget did have lymphoma, he also had a Lyme titer that was literally off the chart; it was above the highest titer level the C6 tested for. Treating his Lyme did not save Gadget’s life, but he responded very well to treatment with the antibiotic, doxycycline. His quality of life during his last few months was tremendously enhanced by treatment for Lyme. His energy and movement improved greatly. I only wish I had realized sooner that the slowing down I’d attributed to age and hypothyroidism was probably actually related to invisible joint pain.
Holistic and Conventional Treatment Approaches
Even among practitioners and clients who try to avoid medications, especially antibiotics, when not absolutely necessary, there is a near consensus that Lyme and other TBDs require “the big guns.” In fact, in my experience, many vets are not as aggressive as they should be when treating Lyme. The microbe that causes the disease is complex and tough. It often remains in the dog’s system even after a short (or even a long) course of antibiotics. Those who have been “in the trenches” of the Lyme life — be it human or canine or both — have learned the hard way that it’s best to hit this disease hard, fast, and sustained. For many vets and owners, this means combining antibiotics with other modalities (herbs, acupuncture, homeopathy) to fight the microbes with all possible weapons.
The best antibiotic to fight Lyme is doxycycline, with two exceptions. One is if your dog is allergic to this drug. If he is, amoxicillin is considered the second-best choice. The other is if you have a puppy whose bones are still forming. Doxycycline can interfere with calcium and affect bone growth, so this is something you and your vet will have to weigh. Treatment should be five milligrams per pound of body weight for at least two months. If your vet wants to take more of a “wait and see” approach without a darn good reason, find another vet!
If you live in a Lyme endemic area and/or you are unable to use any form of effective tick preventative, please take whatever steps you can to help your dog’s immune system fight off infection. While everyone wants their dog to be as healthy as possible, it’s worth noting that the microbe that causes Lyme disease attacks and suppresses the hosts immune system as soon as it begins to colonize. According to Stephen Buhner, the author of Healing Lyme, the degree to which someone gets sick with Lyme disease after exposure to the bacteria — both whether they get Lyme disease and how sick they get — is directly related to the strength of their immune system.
There are two approaches to applying this information. One is ensuring that your dog is as healthy as possible. This means the healthiest possible diet, the right balance of exercise and rest, freedom from stress when possible, and protection from harmful elements, including excessive vaccination, medication, pesticide, and the like. Again, some might also choose other health care modalities to shore up your dog’s immune system.
The second approach is to give your dog herbs (some use tinctures, others dried herbs as capsules) specifically shown to help prevent Lyme or to treat early-stage Lyme. This way, if your dog is exposed to Lyme-causing agents, you might head off the disease before it gets a foothold. The herbs in this list are sarsaparilla, cat’s claw, andrographis, astragalus, and resveratrol (Japanese knotweed — not the grape extract sold under the same name). Obviously, to learn the proper administration and dosage, you should consult an herbalist experienced with canine Lyme.
While Lyme-fighting supplements and a superbly healthy lifestyle can go a long way toward prevention of Lyme — or of chronic Lyme — they are by no means guarantees. Please don’t think that you don’t need to tick check just because you feed raw, don’t vaccinate, and don’t use pesticides. Anyone can get sick from this nasty, stealthy bug. By the same token, if your dog does get sick, please don’t blame yourself. We should all do the most we can to be aware and take preventative measures, but in the end, luck plays a factor, too.
Thank you for reading this long post!
May this information remain strictly academic for you and your dogs, for years and years to come.
As always, we welcome your comments and questions.
-Sharon and the muse of Gadget, with Barnum (the fast-growing, and so far, healthy, puppy)
Sorry for the lag between posts. I’ve been focused on the following:
1. Learning how to make After Gadget more accessible and then going back to revise all previous pages and posts to get them up to scratch. (Almost, but not quite done. I should be done when the next “real” blog goes up.)
P.S. Even if you have not received a complaint about your blog’s inaccessibility, please do not assume it works for everyone. For example, I haven’t had any complaints about After Gadget, but I’ve learned some ways to improve it.
Personally, I flee many a website or blog because it’s not accessible to me, without ever telling the webmaster or blogger that there are problems. Aside from it being a pain in the butt to constantly fight for access, it’s not alway even possible if you can’t access the site to begin with. Stepping off my (fragrance-free) soap box now.
2. Sleeping. You know, it turns out that sleep really can be excellent. I don’t think I’ll make it into a lifestyle or anything, but now and again, it’s very refreshing. I recommend it.
3. Puppy preparations!
A. Which puppy?
The breeder has narrowed it down to two boys as the best candidates for what I’m seeking in a future SD. (The latest puppy photos are at legacybouviers.com, an inaccessible site. Click on “New Arrivals.”) They sound unbelievably adorable and sweet. They both love to be held, and you can pick them up and rub their bellies and paws, and they just go limp! Isn’t that the best? And, although they like to play, they are good at settling down and are super mellow, which I need, because when we are aren’t training or working or exercising, we will be resting a lot. They also are curious and bold, but not overly obnoxious. Of course, it’s still too soon to tell. The final decision won’t be made until formal temperament testing is done between weeks seven and eight.
B. How to get the puppy here?
I’ve been working on getting Monsieur le Petit Chien here. I’ve decided to book flights for Betsy to fly in, pick up the puppy, and fly back. I have not booked a flight in fifteen years, if that, and never before booked a pup as “carry on,” so I’m a bit nervous about making it work out. Anyone with experience in this, feel free to post suggestions or soothing remarks and encouragements.
C. When should I take leave of my senses, before or after the puppy gets here?
Most people probably think that getting a puppy in the first place requires taking leave of your senses to a certain degree. I’m not going to argue.
In my case, there are also predictable occasions (and some unpredictable ones) when I have what I affectionately call, “the crazies.” This usually happens when I start a new antiparasitic or antibiotic medication to attack one or more of the tick-borne diseases (TBDs) that have damaged my brain. It’s part of what’s known as a “herx” or a Herxheimer reaction. Herxes can last for days or months. When I was adding new treatments every few months, I essentially herxed for over two years. That was brutal, but I’ve learned a lot from it.
One thing I’ve learned is that it’s better to be honest with myself and others about what’s going on. This helps me handle it better; it helps the people around me handle it better; and it allows my doctors and me to make better decisions about my health care. It also makes me less secretive and ashamed of it, which contributes to all of the above, as well as, in my opinion, making the world a better place (and delusions of grandeur are not even one of my symptoms; I come by them naturally). That’s why I’m taking you on this tangent: one of my roles in life, and in this blog, is to destigmatize and demystify stuff about disability so that disabled folks will have to put up with less oppression. For example, I am certain I’m not the only one taking steps to address psych issues before I get a puppy.
Case in point: I don’t want to be in the middle of a new, big, flaming psych herx when I welcome my puppy into the first home he will ever know after leaving the nest!
So when I talked to my doctor yesterday about which protocol we’re switching to, I had the pup in mind. My doc and I agreed that it’s time to attack my Bartonella infection because it’s been undertreated, and it’s caused me loads of problems. She suggested adding a new IV medication. While all my TBDs can cause psych symptoms, the worst are probably related to Bartonella.
“Would this be likely to kick up a psych herx?” I asked.
“Oh,yeah,” she replied with gusto.
“Let’s start that now,” I said.
I told her that I’m getting a puppy in a month, so I want to get “the crazies” out of the way before the puppy arrives. She seemed delighted that I was getting a puppy and asked if it would be the same breed as Gadget. Apparently, I now have medical approval for puppy-lovin’! (Not that disapproval would have deterred me, at all.)
4. I wanted to post some more celebratory blogs occasionally, to keep you all from burning out on my grief, but my computer has been refusing to cooperate.
A long time ago I wrote an essay for my Sick Humor column called, “The Hindrance Dog.” It details an incident wherein a rambunctious new rescue, who is young but strong, teaches his naive handler the dangers of attaching his lead to her mobility device.
I thought this would make for a quick-and-easy post while I worked on items 1, 2, and 3 above, but my computer is refusing to allow me to translate it from its old format. I’ll get there soon, though. Humor is in store, I promise ye.
Instead, here is a different bit of celebration.
I received the email below last night from the Service Dog list on Dogster. I was very honored. Everyone there was very supportive of what Gadget and I went through. (I joined less than two months before he died, though I didn’t yet know that he was dying.) So, it really means a lot to get this posthumous recognition of Gadget — and of our partnership. Thank you, Dogster SD list moderators.
[Accessibility note on the link below: I know guide-dog partners who use Dogster, so I assume it’s text-reader accessible. However, it’s graphically intense, with lots of colors, flashing and moving things, and very small print.]
Congratulations to Gadget’s mom for Gadget being service dog of the month in memory for February!
Gadget was a male Bouvier des Flandres whose page can be seen here:
Gadget passed away in November, but his mom made a wonderful blog about his life and work, and how to cope with the loss of one’s service dog. He was a truly special dog, and continues to impact people today. He knew over 100 commands, and helped his mom not only with her disabilities, but also with greyhound rescue.
So congratulations to Gadget’s mom, and Gadget, we miss you!
Thanks for bearing with me. Another blog will be out soonish.
After Gadget 